I would say the next action is to start breathing.You can carry on looking for answers while this breathing will start to lessen(or cure) some of the symptoms and you or dr might get a better idea of any problem.
Drink a glass of water and do the following breathing daily starting now.
- Deep Breath-in through left nostril keeping right nostril closed
then - Breath-out through right nostril keeping left nostril closed
then -Deep Breath-in through right nostril keeping left nostril closed
then - Breath-out through left nostril keeping right nostril closed
and repeat this cycle for upto 15 minutes. Maximum 3 times day.
Has he been tested for lupus and or other auto-immune diseases?SEE a REUMATOLIGIST DR.) Has he been to a neurologist for the fainting spells? How about an infectious disease specialist? You said he has had all the tests ammaginable but can you name a few? How about thyroid or diabeties? (SEE AN ENDO--- OLGIST) not sure of exact title. Has he been ingesting anything toxic, has he had a toxin screen done? Hoping for the best for you and your husband. I hope some of these questions bring you closer to the answers.
He has had ALOT of bloodwork. Everytime he goes to one they draw blood. Yes they checked his thyroid and for diabeties. He has had EGD, colonoscopy, abdominal/pelvic ct, chest ct, mri's.....very detailed mri only available at the hospital who performed it of his sinus's because sinus cancer was suspected ....and ruled out. They are bad so the breathing suggested is not a option. Ability to breath thru his nose is limited/none. EEG on his heart. He does have a neurologist who is actually a neurosurgeon because she is the best even though surgery may not be necessary. She took over his medical care.
Because cancer has been suspected all this time he has even had a pet scan. The Otolaryngologist he saw who ruled out sinus cancer said my husband's are the worst he has seen but refused to fix them until he went thru the oncology dept at the hospital. You just have to look at my husband and its obvious there is something wrong. Oncology never saw him and refered him to internal med. The dr he saw did want all his care to go thru her from now on. He's been bounced around for so long to different dr that there really hasn't been one who has taken the lead. She is finally. His first appt with her she wanted to give him a IV he looked so bad to her. He was actually looking pretty good that day. She should of saw him at his worst when the nausea is around and his weight is down in the 120's. Normally 180-185.
Does he get dizzy when he stands ? It sounds like he could have postural tachycardia:
I think ideasofmarch hit the nail on its head. He should be checked for autoimmune disorders, see an endocrinologist and have a toxicology screen done. I also think he should be checked for Celiac disease and also have a cortisol level drawn. If he has Celiac disease, he's not absorbing the necessary vitamins & minerals to stay healthy. Does he have diarrhea ? Please also keep in the back of your mind that if they do all of this additional testing and it is normal, he should see a physician who diagnoses and treats CFS. CFS can be disabling... and it affects your nervous, endocrine and immune system. Headaches, fatigue, muscle wasting, stomach problems.... all of those could be symptoms of CFS and especially the postural tachycardia.
He has gotten dizzy when he stands but it doesn't happen since it can be controled. Since it first happened and and he is aware of it he does EVERYTHING so that it doesn't happen. He works construction so he HAS TO MAKE SURE it doesn't happen or he could fall off a roof. When it has happened lately its been when he's been bent over....building a wall on the ground or playing with the cat and stood up too fast. I saw the cat one!!! Even though he had told me it happens it was frightening to me seeing him fall over in our hallway.
At his last appt the dr took alot of blood. She said she was checking everything. I know I saw Magnesium and potassium on the list and lots of other things I didn't recognize. They never called with anything so I thought it was just ok. they also checked his bp/pulse sitting, standing and laying down. They said the dizzyness could be LOW blood pressure. I called them Friday because he mentioned to me he was constipated for a few week and was going to get something for it. They made a appt for him for Monday. Diarrhea and constipation alternated in the begining but lately constipation is the problem.
I cant help but to think that his finger and toenails are a sign of all of this and they just need to put it all together now.
I also have orthostatic intolerance from CFS and my heart races when I bend over and drink alcohol (which was on rare occasions anyway). I do have dizziness when I stand up too fast and also know how to control it now, just like your husband does. Low blood pressure is also common with CFS.
You may want to call your physician and follow-up on that labwork... sometimes they can miss things. It is also a good idea to get a copy of all of his labs. I do know that many people w/ CFS often have low cortisol levels (explains weight loss) and uric acid levels. Your husband's physician may also want to check his copper level and do an MRI of the brain -- and especially if he has any weakness or tingling sensations.
P.S. --- Are the ridges on your husband's nails vertical or horizontal ? I was just reading information about that on a website that indicated that vertical ridges indicate poor health, poor nutrient absorption (Celiac disease?) and/or a kidney disorder. Horizontal ridges can indicate severe stress.
The ridges are vertical. Down the whole length of his nails. They look awful.
He has his appt this morning. I'm making a list now of things to ask the dr. Since his appt was made Friday I didn't have time to request off work. This will be the first appt durring all of this that I have missed. He's not real verbal so I'm nervous that he wont say anything so I'm making a list now for him to take and give the dr. He's been taking so much tylenol for so long that they need to make sure that is not damaging anything either. I will write the test you said on the list for him to ask the dr about.
Thank you. I will let you know if he find's out anything.
Too much tylenol taken a day for a long amount of time can damage the liver. I pray that the correct answers come quickly. How the heck can he work construction in the condition he is in? His body doesn't have time to rest and heal!
Just a note ask for all the blood work since you didnt really find out about it. look at the papers yourself and see if there are any flags for too high and too low it is a possiblty they might be missing something. I agree check for auto immune, go to an endorcrinolgist and get blood work done up again. Sometimes endo doctors order more than one blood test for each organ function. regualr practioners just might do a regular CBC, but lets just say for kidneys or thryoid there can be mutlitple blood tests to check for full functioning of the organ. So the endo might be more thoro. As a note my sister has those ridges on her nails and her endo said its from a thyroid disease which she is on medicnie for. good luck
I wanted to let you know he went to the dr today. It was a different one AGAIN!!!! He did take my list and gave it to the dr. Asked if I had a medical background so the internet and you folks helped alot.
Some of the visit sounded good....He goes next Monday to get the monitor for his heart....cardio dr...another dr to add to the list. They are checking his thyroid also. PlateletGal, thank you. I listed everything you said to have them check. The dr said he didn't see it done yet in any of the labs so far, and DID DO THEM, according to my husband.
Bad part of the visit...nothing given for the headaches! I couldn't believe it. Dr said it is bad that he is taking to much but didn't give him anything. Didn't bother with the sore on his nose since he already has a derm appt. The worst part was he said his nails were from a fungus. It is NOT!!!! My husband's nails have always been perfect. I've been with him 20yrs. He did say he doesn't know what is wrong but possibly anxiety! It is NOT anxiety. I will be at the next visit with this dr.
idesofmarch, he does ok working most of the time. Summer was really hard on him though. He had alot of dr appt's durring it so he had alot of days off. That was when his weight was at its lowest.
I will start to collect copies on all labs that have been taken. They have got to be missing something. Called derm to let them know I want his nails tested for fungus too so I can show that dr he is wrong.
I really do hope they find out what is going on and fast... I forgot to mention Crohn's disease earlier as a possible (?) diagnosis, but normally people with Crohn's disease have a high white cell count. Not sure about the headaches either, but I have a link for you below on Crohn's. Anyway, I thought I would mention it now, for when your husband hears from his physician (if they still don't have a clue as to what is causing your husband's symptoms).
ideasofmarch brought up a good point. Too much tylenol can be toxic to the liver... just like alcohol can. I wonder if aspirin or ibuprofen will help your husband's headaches ?
Glad they are doing some more tests. I think a diagnosis will be around the corner. Be sure to keep in touch and/or start a new post when they find out what it is!
The symptoms you are describing sound alot like hyperthyroidism, but reading your post I understand this has already been checked out. That leads me to think of adrenal problems. Has Addison's disease been looked into. The symptoms of addisons are mostly the same as your husbands.
The symptoms of adrenal insufficiency usually begin gradually.
chronic, worsening fatigue
loss of appetite - weight loss
Mood swings, mental confusion or loss of consciousness.
Alot of people with the disease have problems with nausea,
vomiting and/or diarrhea
Other symptoms include:
low blood pressure that falls further when standing, causing dizziness or fainting
skin changes in Addison's disease, with areas of hyperpigmentation, or dark tanning, covering exposed and nonexposed parts of the body; this darkening of the skin is most visible on scars; skin folds; pressure points such as the elbows, knees, knuckles, and toes; lips; and mucous membranes
Most cases of Addison's disease are caused by an autoimmune response that attacks and damages the adrenal glands over time.
If your husband's physician ordered that cortisol level (message C6), then it will be the first step in diagnosing Addison's or secondary adrenal insufficiency.